Where a dad of two great kids (one on the autism spectrum) muses about life.

Wednesday, September 23, 2009

When Will They Listen?

One would have had to have been living in a cave in the greater disability community two years ago not to have noticed the Ransom Notes Campaign and the furor that followed it. In that campaign the NYU Child Study Center put out an ad campaign that implied that autistic individuals (as well as those with a number of other conditions) had been kidnapped. This imagery was (not surprisingly) extremely offensive to many in the greater disability community. After an intense counter campaign by disability advocacy groups, including ASAN, the Ransom Notes Campaign was stopped.

The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc.

And as pointed out over at "Cat in a Dog's World", perhaps the worst part about it was that they used video sent in by autistic families while they had their doom and gloom voiceover.

Two years ago the NYU CSC claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media.

I wonder what excuse Autism Speaks can possibly come up with this time.

25 comments:

I wonder if I should watch that, but no doubt it will piss me off to no end, and I'm already annoyed with the transcript I read.Could they pleaseSTOPCOMPARINGAUTISMTOCANCER?As I had cancer, it's rather offensive on multiple levels. How will people really understand autism if they keep shoving stuff like this into people's face?No way I'd give them a red cent.

I know that having a child (or three) on the spectrum can be VERY HARD, and this isn't really spoken of in the "community" very much, probably because of excesses like these. But it would be nice to find some balance. It's tough, but it's a blessing, too. Something like that. Speaking the TRUTH in LOVE.

Do you tell the parents that come through your door that if they don't think autism is a difference not a disability they are crappy parents??

Just curious??

What about those who's children get put in special ed classes, the adults in institutions. Do you tell them that's "glorious". Or do you ignore them as not really being autistic.

What about the ones with violent behaviours?? Is that OK too, do you tell the parents to "get over" themselves. I have noted you go on and on about those with autism that are killed but totally ignore when autistics kill. The Hub is very biased.

Autism isn't glorious. Unfortunately, I don't think the DSM-V is going to get rid of the Aspies, NLD's and HFA's from the spectrum. Which will do more harm than good to those with children with full Autistic disorder... and even more harm when they are adults when we get told "since autism is a difference not a disability... I guess you don't need the services".

While I understand that the message of Autism Speaks is that they are actively campaigning for the children, I also found the beginning of this video offensive and very, very, very dark and depressing...which is nothing like what I know both parents and children in the community.

And while I understand the point of Farmwifetwo, I do take exception. My Aspy has uncontrolable rages, doesn't like people to lavish affection on him, disappears into his own world at times, stymes, is nine and can't control in natural bodily functions, etc. These are the things which are difficult to live with day, after day, after day.

All the hard work people put into raising positive awareness and then this.C’s self injury can be very violent, but with the right attitude and support he enjoys a good quality of life and not the doom and gloom that they portray.

See, that's just it, Casdok. Why can't we just support each other and not be gloomy OR all rosy like everything's ok all the time?

I think autism IS a difference, but it's a difference that ought to be viewed as a disability in some respects when the person described is unable to function in the world without a lot of help a neurotypical child wouldn't need. We have such a long way to go.

I have just completed paperwork for Woodjie to go to preschool. In it they ask things like, did I take drugs when I was pregnant, do I use car seats for my kid and oh... does the kid have any special abilities. I'm left wondering if people think I'm a child abuser (thus "causing" this) and/or raising a Rainman kinda kid who can instinctively be aware of toothpick numbers. (??)

First of all, I think that autism is both a difference *and* a disability. I also understand that autism manifests itself quite differently in different individuals. Part of the disability I view as being intrinsic in some of the things that come with being autistic (or occur more frequently with being autistic). Things like excessive perseveration, sensory processing problems, and self regulation difficulty. A large part of the disability comes from a society that is intolerant of differences, and wants everyone to be compliant with a tight set of rules and behaviors. Not all of these apply to all autistics, certainly not in equal measures.

So why you think I glorify everything about being autistic is beyond me. I do revel in the accomplishments of both of my kids, as any proud father would. I won't apologize for that.

Parenthood is hard. And raising any kids with any kind of special needs is probably harder, on average. My wife and I have faced many challenges, and will continue to do so. Just because I refuse to join in the "my life is worse than yours because I have an autistic kid that is ruining my pre-conceived notions of what my perfect life should be" rhetoric, doesn't mean that our lives are without challenge.

When I think about what the "public face" of autism should be, a couple of things guide my thoughts. One is, "What would my son (once he's grown up) have wanted me to say about him now?" In other words, will my son twenty years from now look back and be proud of what I said, or be ashamed. The best way of knowing what he might think is to look at what other autistics that are older think right now.

The second thing that guides my thinking and writing is the basic human respect that I deeply feel that all people should have. Respect is a virtue that is neither liberal or conservative, and is the province of no particular racial or ethnic group. It is what we all should have for each other. In fact, this is so important that it is really the primary thing that informs what I write.

Finally, I want what I think most other parents want for their kids-for them to be happy, to grow up, be accepted, get a job, and to live independently. Not all kids will achieve all these things. But I look at the things I write, and ask myself if what I write will make things better for my kids, or worse. Will my words make it more likely that society will be more accepting and accommodating in the future, or less? Will my words make things worse, and end up encouraging and justifying those in society who would warehouse anyone that's different, and not "waste" money on teaching them, much less trying to help them live independently.

I don't see how anyone could feel that any ads that perpetuate negative stereotypes will ultimately lead to more acceptance for our kids in the future. I don't care how much more money people think negative ads will raise (and I don't think that negative ads raise *that* much more money), there is no ethical justification for making autism seem to be so horrible that no right thinking person would ever want to include someone with that diagnosis in any capacity in society (give them a job, rent to them, or heaven forbid-befriend them).

I have never argued that adult autistics don't need services. That is a straw man argument that is often raised-"If you don't think that autism is the most devastating disease that has kidnapped our kids and is destroying society, then you don't think autistics need any assistance."

I'm sorry that you don't see the blatant disrespect and offensiveness of this video. As Emily says, what if it was Down's syndrome, or something else? Would we tolerate this? I hope not.

Please don't make assumptions about things you don't know, and don't put words in my mouth I haven't said.

I couldn't even watch the whole thing. I can't even compose a response. THIS is what ruins my life...seeing crap like this video. Having children with disabilities certainly doesn't ruin my life. I homeschool both boys and deal with attention issues rages sensory etc. But because of my boys my husband and I have made choices that we may never have made...and BECAUSE of autism and other things "we didn't sign up for", our marriage and family has grown. It's not easy, but it's our life. I'll be damned if someone tells me my life and my boys are some kind of horrible death sentence.

I was named after two people who died from cancer and I knew someone who died from cancer. They died. They are no longer living. For those reasons, people are now still sad. Autism is not comparable to that. Autistic people have normal life expectancies, unlike people with cancer, who die if not given treatment and in some cases die even IF they get treatment. And about autistics who are put into special education classrooms and institutions, that's a societal construct that comes from the idea that the disabled should be kept away from "normal" people unless they can successfully pass for a member of the "normal" majority. I have been in special education classrooms where I was supposed to learn "social skills" and "speech" and then return to a classroom where the rest of the kids would make fun of me. I have also gone through emotionally, psychologically and sometimes physically abusive "therapies" that involved being painfully forced to make eye contact, being called names, being told that my behaviors were something to be "fixed" and "worked on," and being forced to endure situations that were painful, like being stuck in a room where I was surrounded by loud noises and not being allowed to leave and being told that I could not possibly be in so much pain after receiving treatment for a plantar wart because "if you were in that much pain, you'd have to go to the hospital." I don't know what is more of an atrocity: that this kind of shit was considered acceptable for me just because I was autistic and had "abnormal" behaviors, or that compared to other autistic minors, I've gotten off easy. Before you go saying that I'm saying it's an atrocity that I can't say that I have it worse than everyone else, that is not what I mean. There are kids who are put into restraints and seclusion rooms at schools and there are disabled "students" at the JRC who have been fitted with shock devices delivering electrical shocks that are greater than those that are legal for dogs. That those things are allowed to happen is an atrocity greater than the things that have happened to me.

"Do you tell the parents that come through your door that if they don't think autism is a difference not a disability they are crappy parents??"At what point did this come to mind while reading this post?

"What about those who's children get put in special ed classes, the adults in institutions. Do you tell them that's "glorious". Or do you ignore them as not really being autistic."How dare you say this man is even suggesting this?! He has Autistic children. You are insulting the man's parenting skills!

"What about the ones with violent behaviours?? Is that OK too, do you tell the parents to "get over" themselves. I have noted you go on and on about those with autism that are killed but totally ignore when autistics kill. The Hub is very biased."This seems like a rather biased statement to me. First of all, you are assuming Autistic people are MORE likely to be violent than NT people. Second, the poster never once talked about violent behavior. Third, where do you get off giving parenting advice when you obviously have no children.

"Autism isn't glorious. Unfortunately, I don't think the DSM-V is going to get rid of the Aspies, NLD's and HFA's from the spectrum. Which will do more harm than good to those with children with full Autistic disorder... and even more harm when they are adults when we get told "since autism is a difference not a disability... I guess you don't need the services"."Autism isn't glorious? You are totally wrong on that. I have Asperger's and would not change myself for anything in the world. I am glorious, thank you very much! What does the DSM have to do with anything that was mentioned in this post? The harm comes not from the DSM. The harm comes from narrow-minded bigots such as yourself.

Actually, the autism spectrum is a socio-medical construct to describe the way a group of people think. Our traits have always been there. It is only in relatively recent times that curebie "professionals" decided to medicalize them so that they could make extra money off of quack therapies. It could just as easily be those who are called "normal" in the same situation. They could have been diagnosed with Oversocialization Spectrum Disorder and have been told that they were abnormal due to their lack of focused interests and inability to cope with solitude. SeeA Cultural Evaluation andWhat it's like to be...for more information on the subject. In truth, no one is safe from being discriminated against unless disability prejudice is taken down altogether. It's the same thing with beauty. In the Middle Ages, the standard of beauty for women was to be plump and pale and if you were tan and slender, as is the standard of beauty today, it would have indicated that you were poor. In China, for over a thousand years, young girls had their feet bound if they were of high status because it was considered to be beautiful and if their feet were not bound, their feet were considered ugly and they had less of a chance of finding a husband. The tables were turned when Chairman Mao's Cultural Revolution came about. He preached the message that binding girls' feet was bourgeouis and other people said that the custom put China up for ridicule in the rest of the world. Throw in anti-footbinding societies that wouldn't bind their daughters' feet or let their sons marry women with bound feet, and the standards of beauty were quickly changed. Almost anyone who looks at a picture of bound feet today is grossed out and wonders what the hell the people who came up with that were smoking.Disability is like that. It's a socio-medical construct based on what "most" people are like. It's boundaries shift from time to time and anyone who is in the "normal" category today could be in our situation tomorrow.

@Joeymom: There is nothing wrong with a child getting the extra support he or she needs to learn. From what I have read of your blog, I assume that your children who are in special education are elementary school aged, which would place their dates of birth sometime after 1998 and their entrances into education in 2000 at the earliest. I am currently 16 years old. I was born in 1993 and entered the world of education in 1997 when I was four at a special education preschool for autistic children. My elementary school years were 1999-2005 (kindergarten to fifth grade). Thanks to self-advocates being so persistent in their efforts to change special education and parents advocating better for their children due to the coinage of the term neurodiversity in 1997, special education is way different than it was even a few years ago. For those who are older than your children, however, their experiences were often less than beneficial. Jonathan Mitchell speaks of being in special education schools and classes and having a bad experience. I shared some of my bad experiences above and will go into more detail here. Because I was a special ed student, I was often sent out of the classroom to go to speech classes where I did nothing but worksheets on stuff I already knew, such as idioms and priorities (ex. What do you think is more important to know, when your next doctor's appointment is or when your school was built?), returning to a regular classroom where I was often made fun of. I was supplied with an aide who was supposed to help me with schoolwork, but she also often did things like force my head upwards to make eye contact (which BURNED!), tell me my behavior was "inappropriate" when I was retaliating against bullies and doing nothing about the bullies. There is also something in the special ed program about the district funding special needs camps, which directly led to most of the psychologically abusive "behavioral modification" that I received. Things have gotten better due to a combination of my gaining better self-advocacy skills and special education around me getting better for those that it's supposed to serve. But my point is that it's not special education that I am opposed to. It's the separation from the "normal students" and separate expectations that I oppose. And those that are older than your children have often had bad experiences with special education.

I think most parents of kids nowadays would tell you that not all of the problems have been fixed. But we are all more aware, and push back at any chance we get when we some of the stuff you describe happening.

Hey Joe. I am aware that not all problems have been solved in special education. How else would you explain the existence of the JRC and the usage of restraints and seclusion rooms in schools? Also, how else would you explain the continued existence of the camp that I went to? Here is the URL to their website below:http://www.behaviortherapyassociates.com/histepsummersocialskillsprogramnewjersey.htmlI went there in the days when it was still Stepping Stone and I hated it.In recent years, my experience has changed. I have gained good self-advocacy skills, am listened to more by my teachers, and things have gotten better around me. It's not perfect, but I'm pretty lucky compared to most kids who are in special education right now. There is a quote in the Bible about how when a person is given much, much is expected in return. I give much in return for the good luck I have had by speaking up against abuses like and beyond that which I have experienced. And about my sharing of my experiences, even though my heart breaks again and again each time I tell of my heartbreaking experiences, as Elie Wiesel said, "Better than one heart be broken a thousand times in the retelling, if it means that a thousand other hearts need not be broken at all." And yes, it is better that my heart be broken a trillion times telling my experiences if it will prevent trillions of future autistics from heartbreaking experiences like and beyond mine.

I'm looking forward to hearing the story about your 9-year-old. I always feel happy when I hear about young autistic children advocating for themselves and having a better time in life than I had. When I was 9 years old, I was in the closet and living in fear that everyone would find out I was autistic and bully me.

That definitely is a harsh video! I can't imagine an agency that supports people with a different disability, such as Down syndrome maybe, painting such a bleak picture of life with a disability... they almost make it seem like life with autism is not worth living!

just stopped by after seeing an article in TIME magazine....it's very upsetting to me.

Autism Speaks suggests that parents of autistic kids are "the" victims of autism - by getting stuck with unwanted, unlovable, yukky kids instead of getting the kids that they, as parents and as human beings, are ENTITLED to...the message seems to be that autistic people shouldn't be allowed to exist, because their existence hurts the real victims of autism: the parents (and, perhaps, the "missing children" - the ones who aren't allowed to exist because these unwanted kids are taking their spot)

Whose who in this family?

Me- Joe, husband of a great wife, and dad to two great kids, who were both adopted at birth.
Liz- My ever understanding wife, who manages to wear many hats (mom, advocate, therapist, teacher) for our kids.
Buddy Boy- Born in 2000. Funny, intelligent, inventive, and autistic. Loves machines.
Sweet Pea- Born in 2002. Typical little sister. Competitive, outgoing, and smart. Loves anything pink.